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Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living".Center for Disease Control and Prevention. (2013)
Developmental disabilities.
Retrieved October 18, 2013
Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as
global developmental delay Global developmental delay is an umbrella term used when children are significantly delayed in their cognitive and physical development. It can be diagnosed when a child is delayed in one or more milestones, categorised into motor skills, speech ...
. The most common developmental disabilities are: * Motor disorders, and learning difficulties such as
dyslexia Dyslexia, also known until the 1960s as word blindness, is a disorder characterized by reading below the expected level for one's age. Different people are affected to different degrees. Problems may include difficulties in spelling words, r ...
,
Tourette's syndrome Tourette syndrome or Tourette's syndrome (abbreviated as TS or Tourette's) is a common neurodevelopmental disorder that begins in childhood or adolescence. It is characterized by multiple movement (motor) tics and at least one vocal (phonic) ...
, dyspraxia,
dysgraphia Dysgraphia is a learning disability of written expression, which affects the ability to write, primarily handwriting, but also coherence. It is a specific learning disability (SLD) as well as a transcription disability, meaning that it is a writ ...
, Irlen syndrome, and
dyscalculia Dyscalculia () is a disability resulting in difficulty learning or comprehending arithmetic, such as difficulty in understanding numbers, learning how to manipulate numbers, performing mathematical calculations, and learning facts in mathematics. ...
. *
Autism The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
and
Asperger syndrome Asperger syndrome (AS), also known as Asperger's, is a former neurodevelopmental disorder characterized by significant difficulties in social interaction and nonverbal communication, along with restricted and repetitive patterns of beha ...
are a series of conditions called
autistic spectrum disorders The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
that causes difficulties in communications. Autistic spectrum disorders affect speech, understanding body language, social interactions, difficulty in understanding others in areas such as
sarcasm Sarcasm is the caustic use of words, often in a humorous way, to mock someone or something. Sarcasm may employ ambivalence, although it is not necessarily ironic. Most noticeable in spoken word, sarcasm is mainly distinguished by the inflection ...
and other's feelings, and causes repetitive behaviors known as
stimming Self-stimulatory behavior, also known as "stimming" and self-stimulation, is the repetition of physical movements, sounds, words, moving objects, or other repetitive behaviors. Such behaviors (also scientifically known as 'stereotypies') are fou ...
. *
Down syndrome Down syndrome or Down's syndrome, also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual d ...
is a genetic condition in which people are born with an extra copy of chromosome 21. This extra copy affects the development of the body and brain, causing a range of physical and mental impairments for the individual. *
Fragile X syndrome Fragile X syndrome (FXS) is a genetic disorder characterized by mild-to-moderate intellectual disability. The average IQ in males with FXS is under 55, while about two thirds of affected females are intellectually disabled. Physical features ma ...
, most frequent among boys, is thought to cause
autism The autism spectrum, often referred to as just autism or in the context of a professional diagnosis autism spectrum disorder (ASD) or autism spectrum condition (ASC), is a neurodevelopmental condition (or conditions) characterized by difficulti ...
and intellectual disability. * Pervasive developmental disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. * Fetal alcohol spectrum disorders are a group of conditions caused prior to birth that can occur in a person whose mother drank alcohol during pregnancy. *
Cerebral palsy Cerebral palsy (CP) is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sens ...
is a group of disorders that affect a person's ability to move and maintain balance and posture. They are the most common motor disability in childhood. *
Intellectual disability Intellectual disability (ID), also known as general learning disability in the United Kingdom and formerly mental retardation, Rosa's Law, Pub. L. 111-256124 Stat. 2643(2010). is a generalized neurodevelopmental disorder characterized by signif ...
, also (sometimes proscriptively) known as mental retardation, is defined as an IQ below 70, along with limitations in adaptive functioning and onset before the age of 18 years. *
Attention deficit hyperactivity disorder Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by excessive amounts of inattention, hyperactivity, and impulsivity that are pervasive, impairing in multiple contexts, and otherwise age-inap ...
, often called ADHD, is a neurodevelopmental disorder characterized by executive dysfunction. It has effects on attention span, cognition, self-control, and emotional regulation.


Causes

The causes of developmental disabilities are varied and remain unknown in a large proportion of cases. Even in cases of known etiology, the line between "cause" and "effect" is not always clear, leading to difficulty in categorizing causes. Genetic factors have long been implicated in causing developmental disabilities. These conditions are also believed to have a large environmental component, and the relative contributions of
nature versus nurture Nature versus nurture is a long-standing debate in biology and society about the balance between two competing factors which determine fate: genetics (nature) and environment (nurture). The alliterative expression "nature and nurture" in English h ...
have been debated for decades.
Preterm birth Preterm birth, also known as premature birth, is the birth of a baby at fewer than 37 weeks gestational age, as opposed to full-term delivery at approximately 40 weeks. Extreme preterm is less than 28 weeks, very early preterm birth is betwee ...
is known to be a predictor for potential developmental disabilities later in childhood, which complicates the question of nature versus nurture, as Current theories on causation focus on genetic factors; more than 1,000 known genetic conditions include developmental disabilities as a symptom. Developmental disabilities affect between 1 and 2% of the population in most western countries, although many government sources acknowledge that statistics are flawed in this area. The worldwide proportion of people with developmental disabilities is believed to be approximately 1.4%. Such disabilities are twice as common in males as in females, and some researchers have found that the prevalence of mild developmental disabilities is likely to be higher in areas of poverty and deprivation, and among people of certain ethnicities.


Diagnosis and quantification

Developmental disabilities can be initially suspected when a child does not reach expected
child development stages Child development stages are the theoretical milestones of child development, some of which are asserted in nativist theories. This article discusses the most widely accepted developmental stages in children. There exists a wide variation i ...
. Subsequently, a
differential diagnosis In healthcare, a differential diagnosis (abbreviated DDx) is a method of analysis of a patient's history and physical examination to arrive at the correct diagnosis. It involves distinguishing a particular disease or condition from others that p ...
may be used to diagnose an underlying disease, which may include a
physical examination In a physical examination, medical examination, or clinical examination, a medical practitioner examines a patient for any possible medical signs or symptoms of a medical condition. It generally consists of a series of questions about the pati ...
and
genetic test Genetic testing, also known as DNA testing, is used to identify changes in DNA sequence or chromosome structure. Genetic testing can also include measuring the results of genetic changes, such as RNA analysis as an output of gene expression, ...
s. The degree of disability can be quantified by assigning a ''developmental age'' to a person, who may be classified by age group resulting from their test scores. This, in turn, can be used to calculate a ' (DQ) as follows: DQ = \frac * 100


Associated issues


Physical health issues

Many physical health factors associated with developmental disabilities. For some specific syndromes and diagnoses, these are inherent, such as poor heart function in people with Down syndrome. People with severe communication difficulties find it difficult to articulate their health needs and, without adequate support and education, might not recognize ill health.
Epilepsy Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrica ...
, sensory problems (such as poor vision and hearing),
obesity Obesity is a medical condition, sometimes considered a disease, in which excess body fat has accumulated to such an extent that it may negatively affect health. People are classified as obese when their body mass index (BMI)—a person's ...
, and poor
dental health Dental Public Health (DPH) is a para-clinical specialty of dentistry that deals with the prevention of oral disease and promotion of oral health. Dental public health is involved in the assessment of key dental health needs and coming up with effe ...
are over-represented in this population.
Life expectancy Life expectancy is a statistical measure of the average time an organism is expected to live, based on the year of its birth, current age, and other demographic factors like sex. The most commonly used measure is life expectancy at birth ...
among people with developmental disabilities as a group is estimated at 20 years below average, although this is improving. Society has advanced in its adaptive and medical technologies, and other methods to help people lead healthier, more fulfilling lives. In addition, some conditions (such as
Freeman–Sheldon syndrome Freeman–Sheldon syndrome (FSS) is a very rare form of multiple congenital contracture (MCC) syndromes ( arthrogryposes) and is the most severe form of distal arthrogryposis (DA). It was originally described by Ernest Arthur Freeman and Joseph ...
) do not affect life expectancy.


Mental health issues (dual diagnoses)

Mental health Mental health encompasses emotional, psychological, and social well-being, influencing cognition, perception, and behavior. It likewise determines how an individual handles Stress (biology), stress, interpersonal relationships, and decision-maki ...
issues, and psychiatric illnesses, are more likely to occur in people with developmental disabilities than in the general population, including amongst children who need the support of caregivers who have sufficient psychoeducation and peer support. A number of factors are attributed to the high incidence rate of dual diagnoses: * The high likelihood of encountering traumatic events throughout their lifetime (such as abandonment by loved ones,
abuse Abuse is the improper usage or treatment of a thing, often to unfairly or improperly gain benefit. Abuse can come in many forms, such as: physical or verbal maltreatment, injury, assault, violation, rape, unjust practices, crimes, or other t ...
,
bullying Bullying is the use of force, coercion, hurtful teasing or threat, to abuse, aggressively dominate or intimidate. The behavior is often repeated and habitual. One essential prerequisite is the perception (by the bully or by others) of an ...
and
harassment Harassment covers a wide range of behaviors of offensive nature. It is commonly understood as behavior that demeans, humiliates or embarrasses a person, and it is characteristically identified by its unlikelihood in terms of social and moral ...
) * The social and developmental restrictions placed upon people with developmental disabilities (such as lack of
education Education is a purposeful activity directed at achieving certain aims, such as transmitting knowledge or fostering skills and character traits. These aims may include the development of understanding, rationality, kindness, and honesty ...
,
poverty Poverty is the state of having few material possessions or little income. Poverty can have diverse
, limited
employment Employment is a relationship between two parties regulating the provision of paid labour services. Usually based on a contract, one party, the employer, which might be a corporation, a not-for-profit organization, a co-operative, or any o ...
opportunities, limited opportunities for fulfilling relationships, boredom) * Biological factors (such as brain injury,
epilepsy Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrica ...
, illicit and prescribed drug and alcohol misuse) * Developmental factors (such as lack of understanding of social norms and appropriate behavior, inability of those around to allow/understand expressions of grief and other human
emotions Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition. ...
) * External monitoring factor: all federal- or state-funded residences are required to have some form of behavioral monitoring for each person with developmental disability at the residence. With this information psychological diagnoses are more easily given than with the general population that has less consistent monitoring. * Access to health care providers: in the United States, all federal- or state-funded residences require the residents to have annual visits to various health care providers. With consistent visits to health care providers more people with developmental disabilities are likely to receive appropriate treatment than the general population that is not required to visit various health care providers. These problems are exacerbated by difficulties in diagnosis of mental health issues, and in appropriate treatment and medication, as for physical health issues.


Post-Traumatic Stress Disorder

Risks and Development Individuals with developmental disabilities have an increased risk of developing
post-traumatic stress disorder Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats o ...
compared to the general population due to heightened vulnerability to negative life experiences, including: * Interpersonal trauma * Abuse * Dependence on caregivers * Lack of autonomy * Diminished social support * Harassment * Stigma and prejudice Post-traumatic stress disorder is a psychological disorder that can develop after experiencing or witnessing
trauma Trauma most often refers to: *Major trauma, in physical medicine, severe physical injury caused by an external source *Psychological trauma, a type of damage to the psyche that occurs as a result of a severely distressing event *Traumatic inju ...
and is characterized by negative thoughts, memories, or dreams about the trauma, avoidance of reminders of the trauma, adverse changes in thinking and mood, and heightened acute stress response. Post-traumatic stress disorder often goes undiagnosed among individuals with developmental disabilities due to providers' and caregivers' lack of understanding and differences in communication ability. Individuals with developmental disabilities may develop more intense symptoms of post-traumatic stress disorder when compared to the general population due to maladaptive coping and neurological differences. These symptoms may manifest differently depending on the severity of the disability; post-traumatic stress disorder may present as challenging behaviors such as aggression and self-harm, and communication of symptoms may be limited by verbal ability. Mental health problems are often reported by proxy rather than self-report, which can increase the risk of underreporting and of psychological symptoms going undiagnosed. Psychological Treatment Diagnosis, assessment, and treatment approaches for post-traumatic stress disorder typically require verbal communication and insight into cognitions, emotions, and functioning. Individual differences in communication and intellectual ability among individuals with developmental, and particularly intellectual disabilities can limit identification and treatment of post-traumatic stress disorder symptoms. Thus, diagnosis and treatment approaches should be modified to fit the individual. Some individuals with developmental disabilities may have difficulty understanding and articulating negative thought processes and emotions associated with traumatic events. Metaphors, simplified explanations, and explicit examples may help elucidate symptoms of post-traumatic stress disorder and improve understanding of treatment approaches. Frequent prompting, repetition of explanations, and developing detailed timelines of life events may also improve focus and engagement in psychological treatment. Providers should clearly understand individual needs and abilities and ensure that expectations for treatment are consistent with individual abilities and functioning. The following trauma-specific treatments have demonstrated efficacy among individuals with developmental disabilities, particularly when tailored to individual needs and presentation. Child-Parent Psychotherapy Child-parent psychotherapy is a relational treatment that focuses on improving child-parent relationships and functioning following a young child's exposure to one or more traumatic experiences. This treatment is designed to enhance the attachment relationships between children between the ages of zero and five and their caregivers, eliciting a sense of safety and improving emotional regulation and behavior. Children with developmental disabilities have a higher risk of exposure to traumatic events than children within the general population. Child-parent psychotherapy can accommodate non-verbal communication, making it a good fit for children with a wide range of abilities. Child-parent psychotherapy has been demonstrated to reduce symptoms of post-traumatic stress disorder in children with developmental disabilities and may help enhance caregivers' understanding of their children's disabilities and individual needs. Two 2014 case studies demonstrated the efficacy of child-parent psychotherapy with two children who were exposed to traumatic events. One of the children was 14 months with global developmental delays, and the other was six with autism spectrum disorder. At the time of this study, most studies that evaluated the efficacy of child-parent psychotherapy did not include any information about children with autism or intellectual disabilities. Both children and their families had about one year of weekly therapy, and both saw improvements in attachment relations, decreased trauma symptoms, and overall improvements in functioning. Exposure Therapy Exposure-based therapies are among the most common treatments for post-traumatic stress disorder. Exposure therapy involves exposing a patient to a source of stress (such as a memory or reminder of a traumatic event) to increase tolerance to feared stimuli, overcome avoidance, and gradually reduce acute stress response symptoms of post-traumatic stress. Exposure therapy should be carefully tailored to the individual when treating individuals with developmental disabilities to reduce the risk of re-traumatization. There is preliminary evidence that exposure therapy paired with
relaxation technique A relaxation technique (also known as relaxation training) is any method, process, procedure, or activity that helps a person to relax; to attain a state of increased calmness; or otherwise reduce levels of pain, anxiety, stress or anger. Rela ...
s, cognitive restructuring, and
problem-solving Problem solving is the process of achieving a goal by overcoming obstacles, a frequent part of most activities. Problems in need of solutions range from simple personal tasks (e.g. how to turn on an appliance) to complex issues in business an ...
can reduce symptoms of post-traumatic stress disorder among individuals with developmental disabilities. In a 2009 case study, a 24-year-old woman with an intellectual disability experienced a reduction in posttraumatic stress disorder symptoms following nine exposure therapy sessions. The therapists used a shield analogy, in which they encouraged the client to envision newly learned relaxation techniques and coping statements as a shield protecting her. They used modified exposure to reduce the risk of re-traumatizing the client; she imagined her nightmares and flashbacks rather than the trauma itself. Trauma Focused Cognitive Behavioral Therapy Trauma focused cognitive behavioral therapy is a short-term treatment that focuses on reducing and changing negative and unhelpful thought processes related to traumatic experiences and processing and managing associated negative emotions. Differences in language and thinking can make cognitive-based interventions challenging for individuals with developmental, and particularly intellectual, disabilities. Still, there is evidence that trauma focused cognitive behavioral therapy can be adapted using metaphors and simplified examples to be accessible and beneficial for individuals with mild intellectual disabilities. In a 2016 case study, therapists used a metaphor to describe post-traumatic stress disorder and aid treatment for a young man diagnosed with an intellectual disability and autism spectrum disorder. They explained his symptoms by describing his brain as a kitchen cupboard and his traumatic memories as tins that had not been organized properly, and therefore kept falling out. The young man had a significant improvement in mood and symptoms after 12 sessions of adapted trauma focused cognitive behavioral therapy. Eye-Movement Desensitization and Reprocessing Eye-movement desensitization and reprocessing is a psychological treatment in which the patient's stress is reduced by associating traumatic experiences with bilateral stimulation such as rapid, rhythmic eye movements or tapping. Eye-movement desensitization is demonstrated to be highly effective at reducing symptoms of post-traumatic stress disorder across individuals with varying severity of intellectual disabilities; it has the most evidence for treating individuals with developmental disabilities based on numerous case studies. Eye-movement desensitization can be adapted for individuals with limited language abilities, making it accessible to a wide range of developmental disabilities.


Abuse and vulnerability

Abuse Abuse is the improper usage or treatment of a thing, often to unfairly or improperly gain benefit. Abuse can come in many forms, such as: physical or verbal maltreatment, injury, assault, violation, rape, unjust practices, crimes, or other t ...
is a significant issue for people with developmental disabilities. They are regarded as a vulnerable people in most jurisdictions. Common types of abuse include: *
Physical abuse Physical abuse is any intentional act causing injury or trauma to another person or animal by way of bodily contact. In most cases, children are the victims of physical abuse, but adults can also be victims, as in cases of domestic violence or wo ...
(withholding food, hitting, punching, pushing, etc.) *
Neglect In the context of caregiving, neglect is a form of abuse where the perpetrator, who is responsible for caring for someone who is unable to care for themselves, fails to do so. It can be a result of carelessness, indifference, or unwillingness a ...
(withholding help when required, e.g., assistance with personal hygiene) *
Sexual abuse Sexual abuse or sex abuse, also referred to as molestation, is abusive sexual behavior by one person upon another. It is often perpetrated using force or by taking advantage of another. Molestation often refers to an instance of sexual assa ...
is associated with psychological disturbance. Sequeira, Howlin, & Hollins found that sexual abuse was associated with increased rates of mental illness and behavioral problems, including symptoms of post-traumatic stress. Psychological reactions to abuse were similar to those observed in the general population, but with the addition of stereotypical behavior. The more serious the abuse, the more severe the symptoms that were reported.Psychological disturbance associated with sexual abuse in people with learning disabilities. Case-control study. / Sequeira, H; Howlin, P; Hollins, S.In: ''British Journal of Psychiatry'', Vol. 183, No. NOV., 11.2003, p. 451–456. * Psychological or
emotional abuse Emotions are mental states brought on by neurophysiological changes, variously associated with thoughts, feelings, behavioral responses, and a degree of pleasure or displeasure. There is currently no scientific consensus on a definition ...
(
verbal abuse Verbal abuse (also known as verbal aggression, verbal attack, verbal violence, verbal assault, psychic aggression, or psychic violence) is a type of psychological/mental abuse that involves the use of oral, gestured, and written language direct ...
, shaming and belittling) * Constraint and restrictive practices (such as turning off an electric wheelchair so a person cannot move) *
Financial abuse Finance is the study and discipline of money, currency and capital assets. It is related to, but not synonymous with economics, the study of production, distribution, and consumption of money, assets, goods and services (the discipline of fin ...
(charging unnecessary fees, holding onto pensions, wages, etc.) *
Legal Law is a set of rules that are created and are law enforcement, enforceable by social or governmental institutions to regulate behavior,Robertson, ''Crimes against humanity'', 90. with its precise definition a matter of longstanding debate. ...
or civil abuse (restricted access to services) * Systemic abuse (denied access to an appropriate service due to perceived support needs) * Passive neglect (a caregiver's failure to provide adequate food, and shelter) Lack of education, lack of
self-esteem Self-esteem is confidence in one's own worth or abilities. Self-esteem encompasses beliefs about oneself (for example, "I am loved", "I am worthy") as well as emotional states, such as triumph, despair, pride, and shame. Smith and Mackie (2007) d ...
and self-advocacy skills, lack of understanding of social norms and appropriate behavior and communication difficulties are strong contributing factors to the high incidence of abuse among this population. A study on the association between different types of childhood maltreatment and the risk of criminal recidivism has also shown that physical neglect during childhood plays a critical role in the repeated crime, independent of mental-health problems for high-risk adults involved with the criminal justice system. In addition to abuse from people in positions of power,
peer abuse Abuse is the improper usage or treatment of a thing, often to unfairly or improperly gain benefit. Abuse can come in many forms, such as: physical or verbal maltreatment, injury, assault, violation, rape, unjust practices, crimes, or other t ...
is recognized as a significant, if misunderstood, problem. Rates of criminal offense among people with developmental disabilities are also disproportionately high, and it is widely acknowledged that criminal justice systems throughout the world are ill-equipped for the needs of people with developmental disabilities—as both perpetrators and victims of crime. Failings in care have been identified in one in eight deaths of people with learning difficulties under NHS England.


Challenging behavior

People with developmental disabilities (particularly autistic spectrum disorders) can exhibit challenging behavior, defined as "culturally abnormal behaviours of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities". Common types of challenging behavior include self-injurious behavior (such as hitting, headbutting, biting, hairpulling), aggressive behavior (such as hitting others, shouting, screaming, spitting, kicking, swearing, headbutting, hairpulling), inappropriate sexualized behavior (such as public masturbation or groping), behavior directed at property (such as throwing objects and stealing) and stereotyped behaviors (such as repetitive rocking, echolalia or elective incontinence). Such behaviors can be assessed to suggest areas of further improvement, using assessment tools such as the
Nisonger Child Behavior Rating Form The Nisonger Child Behavior Rating Form (NCBRF) is an instrument designed to assess the behavior of children with intellectual or developmental disabilities and those with autism spectrum disorder The autism spectrum, often referred to as jus ...
(NCBRF). Challenging behavior in people with developmental disabilities may be caused by a number of factors, including biological (pain, medication, the need for sensory stimulation), social (boredom, seeking social interaction, the need for an element of control, lack of knowledge of community norms, insensitivity of staff and services to the person's wishes and needs), environmental (physical aspects such as noise and lighting, or gaining access to preferred objects or activities), psychological (feeling excluded, lonely, devalued, labelled, disempowered, living up to people's negative expectations) or simply a means of communication. A lot of the time, challenging behavior is learned and brings rewards and it is very often possible to teach people new behaviors to achieve the same aims. Challenging behavior in people with developmental disabilities can often be associated with specific mental health problems. Experience and research suggest that what professionals call "challenging behavior" is often a reaction to the challenging environments that those providing services create around people with developmental disabilities."Challenging behavior" in this context is a method of communicating dissatisfaction with the failure of those providing services to focus on what kind of life makes the most sense to the person and is often the only recourse a developmentally disabled person has against unsatisfactory services or treatment and the lack of opportunities made available to the person. This is especially the case where the services deliver lifestyles and ways of working that are centered on what suits the service provider and its staff, rather than what best suits the person. In general, behavioral interventions or what has been termed
applied behavior analysis Applied behavior analysis (ABA), also called behavioral engineering, is a psychological intervention that applies empirical approaches based upon the principles of respondent and operant conditioning to change behavior of social significance.S ...
has been found to be effective in reducing specific challenging behavior. Recently, efforts have been placed on developing a developmental pathway model in the behavior analysis literature to prevent challenging behavior from occurring. This method is controversial according to the
Autistic Self Advocacy Network The Autistic Self Advocacy Network (ASAN) is an American 501(c)(3) nonprofit advocacy organization run by and for individuals on the autism spectrum. ASAN advocates for the inclusion of autistic people in decisions that affect them, including: ...
, saying that this type of therapy can lead to the development of
Post Traumatic Stress Disorder Post-traumatic stress disorder (PTSD) is a mental and behavioral disorder that can develop because of exposure to a traumatic event, such as sexual assault, warfare, traffic collisions, child abuse, domestic violence, or other threats on ...
and worsening of symptoms later in life.


Societal attitudes

Throughout history, people with developmental disabilities have been viewed as incapable and incompetent in their capacity for decision-making and development. Until the Enlightenment in Europe, care and asylum was provided by families and the Church (in monasteries and other religious communities), focusing on the provision of basic physical needs such as food, shelter and clothing. Stereotypes such as the dimwitted village idiot, and potentially harmful characterizations (such as
demonic possession Spirit possession is an unusual or altered state of consciousness and associated behaviors purportedly caused by the control of a human body by spirits, ghosts, demons, or gods. The concept of spirit possession exists in many cultures and r ...
for people with epilepsy) were prominent in social attitudes of the time. Early in the twentieth century, the
eugenics Eugenics ( ; ) is a fringe set of beliefs and practices that aim to improve the genetic quality of a human population. Historically, eugenicists have attempted to alter human gene pools by excluding people and groups judged to be inferior o ...
movement became popular throughout the world. This led to the forced sterilization and prohibition of
marriage Marriage, also called matrimony or wedlock, is a culturally and often legally recognized union between people called spouses. It establishes rights and obligations between them, as well as between them and their children, and between ...
for those with developmental disabilities in most of the developed world and was later used by
Hitler Adolf Hitler (; 20 April 188930 April 1945) was an Austrian-born German politician who was dictator of Nazi Germany, Germany from 1933 until Death of Adolf Hitler, his death in 1945. Adolf Hitler's rise to power, He rose to power as the le ...
as rationale for the mass murder of intellectually disabled individuals during the
Holocaust The Holocaust, also known as the Shoah, was the genocide of European Jews during World War II. Between 1941 and 1945, Nazi Germany and its collaborators systematically murdered some six million Jews across German-occupied Europe; ...
. The eugenics movement was later thought to be seriously flawed and in violation of human rights and the practice of forced sterilization and prohibition from marriage was discontinued by most of the developed world by the mid 20th century. The movement towards individualism in the 18th and 19th centuries, and the opportunities afforded by the
Industrial Revolution The Industrial Revolution was the transition to new manufacturing processes in Great Britain, continental Europe, and the United States, that occurred during the period from around 1760 to about 1820–1840. This transition included going f ...
, led to housing and care using the asylum model. People were placed by, or removed from, their families (usually in infancy) and housed in large institutions (of up to 3,000 people, although some institutions were home to many more, such as the
Philadelphia State Hospital The Philadelphia State Hospital at Byberry was a psychiatric hospital located on either side of Roosevelt Boulevard (US Route 1) in Northeast Philadelphia, Pennsylvania. It was specifically located in the Somerton section of the city on the borde ...
in Pennsylvania which housed 7,000 people through the 1960s), many of which were self-sufficient through the labor of the residents. Some of these institutions provided a very basic level of education (such as differentiation between colors and basic word recognition and numeracy), but most continued to focus solely on the provision of basic needs. Conditions in such institutions varied widely, but the support provided was generally non-individualized, with aberrant behavior and low levels of economic productivity regarded as a burden to society. Heavy tranquilization and assembly line methods of support (such as "birdfeeding" and cattle herding) were the norm, and the medical model of disability prevailed. Services were provided based on the relative ease to the provider, not based on the human needs of the individual. Ignoring the prevailing attitude, Civitans adopted service to those with developmental disabilities as a major organizational emphasis in 1952. Their earliest efforts included workshops for special education teachers and daycamps for disabled children, all at a time when such training and programs were almost nonexistent. In the United States, the segregation of people with developmental disabilities wasn't widely questioned by academics or policy-makers until the 1969 publication of
Wolf Wolfensberger Wolf Peregrin Joachim Wolfensberger, Ph.D. (1934–2011) was a German-American academic who influenced disability policy and practice through his development of North American Normalization and social role valorization (SRV). SRV extended the wo ...
's seminal work "The Origin and Nature of Our Institutional Models", drawing on some of the ideas proposed by SG Howe 100 years earlier. This book posited that society characterizes people with disabilities as deviant, sub-human and burdens of charity, resulting in the adoption of that "deviant" role. Wolfensberger argued that this dehumanization, and the segregated institutions that result from it, ignored the potential productive contributions that all people can make to society. He pushed for a shift in policy and practice that recognized the human needs of "retardates" and provided the same basic human rights as for the rest of the population. The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability in regard to these types of disabilities, and was the impetus for the development of government strategies for desegregation.Successful
lawsuit - A lawsuit is a proceeding by a party or parties against another in the civil court of law. The archaic term "suit in law" is found in only a small number of laws still in effect today. The term "lawsuit" is used in reference to a civil act ...
s against governments and an increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the U.S. of the
Civil Rights of Institutionalized Persons Act The Civil Rights of Institutionalized Persons Act (CRIPA) of 1980 is a United States federal law intended to protect the rights of people in state or local correctional facilities, nursing homes, mental health facilities, group homes and institu ...
in 1980. From the 1960s to the present, most U.S. states have moved towards the elimination of segregated institutions. Along with the work of Wolfensberger and others including
Gunnar Gunnar is a male first name of Nordic origin (''Gunnarr'' in Old Norse). The name Gunnar means fighter, soldier, and attacker, but mostly is referred to by the Viking saying which means Brave and Bold warrior (''gunnr'' "war" and ''arr'' "warrior ...
and Rosemary Dybwad, a number of scandalous revelations around the horrific conditions within state institutions created public outrage that led to change to a more community-based method of providing services.
By the mid-1970s, most governments had committed to de-institutionalization, and had started preparing for the wholesale movement of people into the general community, in line with the principles of normalization. In most countries, this was essentially complete by the late 1990s, although the debate over whether or not to close institutions persists in some states, including Massachusetts. Individuals with developmental disabilities are not fully integrated into society. Person Centered Planning and Person Centered Approaches are seen as methods of addressing the continued labeling and exclusion of socially devalued people, such as people with a developmental disability
label A label (as distinct from signage) is a piece of paper, plastic film, cloth, metal, or other material affixed to a container or product, on which is written or printed information or symbols about the product or item. Information printed ...
, encouraging a focus on the person as someone with capacities and gifts, as well as support needs.


Services and support

Today, support services are provided by government agencies,
non-governmental organizations A non-governmental organization (NGO) or non-governmental organisation (see spelling differences) is an organization that generally is formed independent from government. They are typically nonprofit entities, and many of them are active in ...
and by
private sector The private sector is the part of the economy, sometimes referred to as the citizen sector, which is owned by private groups, usually as a means of establishment for profit or non profit, rather than being owned by the government. Employment The ...
providers. Support services address most aspects of life for people with developmental disabilities, and are usually theoretically based in community inclusion, using concepts such as social role valorization and increased self-determination (using models such as
Person Centred Planning Person-centred planning (PCP) is a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been a ...
). Support services are funded through government block funding (paid directly to service providers by the government), through individualized funding packages (paid directly to the individual by the government, specifically for the purchase of services) or privately by the individual (although they may receive certain subsidies or discounts, paid by the government). There also are a number of non-profit agencies dedicated to enriching the lives of people living with developmental disabilities and erasing the barriers they have to being included in their community.


Education and training

Education and training opportunities for people with developmental disabilities have expanded greatly in recent times, with many governments mandating universal access to educational facilities, and more students moving out of
special school Special education (known as special-needs education, aided education, exceptional education, alternative provision, exceptional student education, special ed., SDC, or SPED) is the practice of educating students in a way that accommodates th ...
s and into mainstream classrooms with support.
Post-secondary education Tertiary education, also referred to as third-level, third-stage or post-secondary education, is the educational level following the completion of secondary education. The World Bank, for example, defines tertiary education as including univers ...
and
vocational training Vocational education is education that prepares people to work as a technician or to take up employment in a skilled craft or trade as a tradesperson or artisan. Vocational Education can also be seen as that type of education given to an in ...
is also increasing for people with these types of disabilities, although many programs offer only segregated "access" courses in areas such as
literacy Literacy in its broadest sense describes "particular ways of thinking about and doing reading and writing" with the purpose of understanding or expressing thoughts or ideas in Writing, written form in some specific context of use. In other wo ...
,
numeracy Numeracy is the ability to understand, reason with, and to apply simple numerical concepts. The charity National Numeracy states: "Numeracy means understanding how mathematics is used in the real world and being able to apply it to make the bes ...
and other basic skills. Legislation (such as the UK's Disability Discrimination Act 1995) requires educational institutions and training providers to make "reasonable adjustments" to curriculum and teaching methods in order to accommodate the learning needs of students with disabilities, wherever possible. There are also some vocational training centers that cater specifically to people with disabilities, providing the skills necessary to work in integrated settings, one of the largest being Dale Rogers Training Center in
Oklahoma City Oklahoma City (), officially the City of Oklahoma City, and often shortened to OKC, is the capital and largest city of the U.S. state of Oklahoma. The county seat of Oklahoma County, it ranks 20th among United States cities in population, and ...
. (See also
Intensive interaction Intensive interaction is an approach for teaching communication skills to children and adults who have autism, severe learning difficulties and profound and multiple learning difficulties who are still at early stages of development. The approach ...
)


At-home and community support

Many people with developmental disabilities live in the general community, either with family members, in supervised-group homes or in their own homes (that they rent or own, living alone or with flatmates). At-home and community supports range from one-to-one assistance from a support worker with identified aspects of daily living (such as
budgeting A budget is a calculation play, usually but not always financial, for a defined period, often one year or a month. A budget may include anticipated sales volumes and revenues, resource quantities including time, costs and expenses, environme ...
,
shopping Shopping is an activity in which a customer browses the available goods or services presented by one or more retailers with the potential intent to purchase a suitable selection of them. A typology of shopper types has been developed by scho ...
or paying bills) to full 24-hour support (including assistance with household tasks, such as
cooking Cooking, cookery, or culinary arts is the art, science and craft of using heat to prepare food for consumption. Cooking techniques and ingredients vary widely, from grilling food over an open fire to using electric stoves, to baking in vario ...
and
cleaning Cleaning is the process of removing unwanted substances, such as dirt, infectious agents, and other impurities, from an object or environment. Cleaning is often performed for aesthetic, hygienic, functional, environmental, or safety purposes. ...
, and personal care such as showering, dressing and the administration of medication). The need for full 24-hour support is usually associated with difficulties recognizing safety issues (such as responding to a fire or using a telephone) or for people with potentially dangerous medical conditions (such as asthma or diabetes) who are unable to manage their conditions without assistance. In the
United States The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country Continental United States, primarily located in North America. It consists of 50 U.S. state, states, a Washington, D.C., ...
, a support worker is known as a
Direct Support Professional Direct Support Professionals (DSPs) are people who work directly with people with physical disabilities, intellectual disabilities, or developmental disabilities with the aim of assisting the individual to become integrated into his/her community ...
(DSP). The DSP works in assisting the individual with their ADLs and also acts as an
advocate An advocate is a professional in the field of law. Different countries' legal systems use the term with somewhat differing meanings. The broad equivalent in many English law–based jurisdictions could be a barrister or a solicitor. However ...
for the individual with a developmental disability, in communicating their needs, self-expression and goals. Supports of this type also include assistance to identify and undertake new hobbies or to access community services (such as education), learning appropriate behavior or recognition of community norms, or with relationships and expanding circles of friends. Most programs offering at-home and community support are designed with the goal of increasing the individual's independence, although it is recognized that people with more severe disabilities may never be able to achieve full independence in some areas of daily life.


Residential accommodation

Some people with developmental disabilities live in residential accommodation (also known as group homes) with other people with similar assessed needs. These homes are usually staffed around the clock, and usually house between 3 and 15 residents. The prevalence of this type of support is gradually decreasing, however, as residential accommodation is replaced by at-home and community support, which can offer increased choice and self-determination for individuals. Some U.S. states still provide institutional care, such as the Texas State Schools. The type of residential accommodation is usually determined by the level of developmental disability and mental health needs.


Employment support

Employment support usually consists of two types of support: * Support to access or participate in integrated employment, in a workplace in the general community. This may include specific programs to increase the skills needed for successful employment (work preparation), one-to-one or small group support for on-the-job training, or one-to-one or small group support after a transition period (such as advocacy when dealing with an employer or a bullying colleague, or assistance to complete an application for a promotion). * The provision of specific employment opportunities within segregated business services. Although these are designed as "transitional" services (teaching work skills needed to move into integrated employment), many people remain in such services for the duration of their working life. The types of work performed in business services include mailing and packaging services, cleaning, gardening and landscaping, timberwork, metal fabrication, farming, and sewing. Workers with developmental disabilities have historically been paid less for their labor than those in the general workforce, although this is gradually changing with government initiatives, the enforcement of anti-discrimination legislation and changes in perceptions of capability in the general community. In the United States, a variety of initiatives have been launched in the past decade to reduce unemployment among workers with disabilities—estimated by researchers at over 60%. Most of these initiatives are directed at employment in mainstream businesses. They include heightened placement efforts by the community agencies serving people with developmental disabilities, as well as by government agencies. Additionally, state-level initiatives are being launched to increase employment among workers with disabilities. In California, the state senate in 2009 created the Senate Select Committee on Autism and Related Disorders. The committee has been examining additions to existing community employment services, and also new employment approaches. Committee member Lou Vismara, chairman of the MIND Institute at
University of California, Davis The University of California, Davis (UC Davis, UCD, or Davis) is a public land-grant research university near Davis, California. Named a Public Ivy, it is the northernmost of the ten campuses of the University of California system. The inst ...
, is pursuing the development of a planned community for persons with autism and related disorders in the
Sacramento ) , image_map = Sacramento County California Incorporated and Unincorporated areas Sacramento Highlighted.svg , mapsize = 250x200px , map_caption = Location within Sacramento ...
region. Another committee member, Michael Bernick, the former director of the state labor department, has established a program at the California state university system, starting at
California State University East Bay California State University, East Bay (Cal State East Bay, CSU East Bay, or CSUEB) is a public university in Hayward, California. The university is part of the 23-campus California State University system and offers 136 undergraduate and 60 post ...
, to support students with autism on the college level. Other Committee efforts include mutual support employment efforts, such as disability job networks, job boards, and identifying business lines that build on the strengths of persons with disabilities. Though efforts are being made to integrate individuals with developmental disabilities into the workforce, businesses are still reluctant to employ individuals with IDD because of their poor communication skills and emotional intelligence. High functioning individuals with developmental disabilities can find it difficult to work in an environment that requires teamwork and direct communication due to their lack of social awareness. Working with employers to better understand the disorders and barriers that may come from the struggles associated with them, can greatly impact the quality of life for these individuals.


Day services

Non-vocational day services are usually known as day centers, and are traditionally segregated services offering training in life skills (such as meal preparation and basic literacy), center-based activities (such as crafts, games and music classes) and external activities (such as day trips). Some more progressive day centers also support people to access vocational training opportunities (such as college courses), and offer individualized outreach services (planning and undertaking activities with the individual, with support offered one-to-one or in small groups). Traditional day centers were based on the principles of
occupational therapy Occupational therapy (OT) is a global healthcare profession. It involves the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or ''occupations'', of individuals, groups, or communities. The field of ...
, and were created as respite for family members caring for their loved ones with disabilities. This is slowly changing, however, as programs offered become more skills-based and focused on increasing independence.


Advocacy

Advocacy Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social institutions. Advocacy includes activities and publications to influence public policy, laws and budgets by using fac ...
is a burgeoning support field for people with developmental disabilities. Advocacy groups now exist in most jurisdictions, working collaboratively with people with disabilities for systemic change (such as changes in policy and legislation) and for changes for individuals (such as claiming welfare benefits or when responding to abuse). Most advocacy groups also work to support people, throughout the world, to increase their capacity for
self-advocacy The term self-advocacy, which means speaking up for oneself and one's interests, is used as a name for civil rights movements and mutual aid networks for people with intellectual and developmental disabilities. The term arose in the broader civil ...
, teaching the skills necessary for people to advocate for their own needs.


Other types of support

Other types of support for people with developmental disabilities may include: * Therapeutic services, such as speech therapy, occupational therapy, physical therapy, massage, aromatherapy, art, dance/movement or music therapy * Supported holidays * Short-stay respite services (for people who live with family members or other unpaid carers) * Transport services, such as dial-a-ride or free bus passes * Specialist behavior support services, such as high-security services for people with high-level, high-risk challenging behaviors * Specialist relationships and sex education. Programs are set up around the country in hopes to educate individuals with and without developmental disabilities. Studies have been done testing specific scenarios on how what is the most beneficial way to educate people. Interventions are a great way to educate people, but also the most time-consuming. With the busy schedules that everybody has, it is found to be difficult to go about the intervention approach. Another scenario that was found to be not as beneficial, but more realistic in the time sense was Psychoeducational approach. They focus on informing people on what abuse is, how to spot abuse, and what to do when spotted. Individuals with developmental disabilities don't only need the support programs to keep them safe, but everybody in society needs to be aware of what is happening and how to help everybody prosper.Lund, Emily, & Hammond, Marilyn. (2014)
"Single-Session Intervention for Abuse Awareness Among People with Developmental Disabilities
" ''Sexuality and Disability (32)''1, 99-105. Netherlands NY: Springer.
eISSN An International Standard Serial Number (ISSN) is an eight-digit serial number used to uniquely identify a serial publication, such as a magazine. The ISSN is especially helpful in distinguishing between serials with the same title. ISSNs ar ...
1573-6717 Proquest Central document ID 1500659797.


See also

*
American Coalition of Citizens with Disabilities The American Coalition of Citizens with Disabilities (ACCD) was, in the mid-1970s to early 1980s, a national consumer-led disability rights organization called, by nationally syndicated columnist Jack Anderson and others, "the handicapped lobby". ...
*
Behavioral cusp A behavioral cusp is any behavior change that brings an organism's behavior into contact with new contingencies that have far-reaching consequences. A behavioral cusp is a special type of behavior change because it provides the learner with oppo ...
* Disability abuse * List of disability rights activists * List of disability rights organizations


References


Further reading

* * *
US Administration on Developmental Disabilities fact sheet
* Goode, David. (December 1998)
''A History of the Treatment of Persons with Mental Retardation''
AHRC. New York. .
''Real Lives: Contemporary supports to people with mental retardation''
(1998)
''Rights of People with Intellectual Disabilities: Access to Education and Employment'', bilingual reports on 14 European countries


* [https://web.archive.org/web/20131113152733/http://www2.stats.govt.nz/domino/external/pasfull/pasfull.nsf/web/Media+Release+2001+New+Zealand+Disability+Survey:+Snapshot+8+Intellectual+Disabilities?open 2001 New Zealand Snapshot of Intellectual Disability]
''People with Intellectual Disabilities: from Invisible to Visible Citizens of the EU Accession Countries''

Policy brief: ''Education and Employment in the UK''


* * * * Byzek, Julie. (January 1998). ttp://www.raggededgemagazine.com/jan98/calif.htm 'Fighting to keep 'em in' ''Ragged Edge magazine'' * Wishart, G. D. (2003). "The sexual abuse of people with learning difficulties: do we need a social model approach to vulnerability?"
The Journal of Adult Protection
', Vol. 5 No. 3, pp. 14–27. Emerald Publishing Limited.
ISSN An International Standard Serial Number (ISSN) is an eight-digit serial number used to uniquely identify a serial publication, such as a magazine. The ISSN is especially helpful in distinguishing between serials with the same title. ISSNs a ...
1466-8203 DOI 10.1108/14668203200300021 * Piper, Julia. (Michaelmas 2007). "The Case of the Pillow Angel"
''Science in Society Review''
University of Cambridge The Triple Helix.


External links

{{Authority control Special education